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Wednesday, 28 March 2012

The last week or so has seen rapid developments in Rosie's progress, but two very important milestones in particular have been reached. She is now able to sit up on her own for prolonged periods of time, we do still have to be on standby for sudden moments of instability however in the main she is managing periods of around 30 seconds or so unaided which is great. She did this for the first time properly on Saturday at 'Chatterbox' – a speech and language group ran by our local support group. I had been watching Harry play football so missed it but was later treated to my own display in the garden where Rosie also played on the grass for the first time. She was a little unsure at first but soon enjoyed exploring the textures and feeling of this new discovery!

Rosie had started to show signs of wanting to reach out for and grab/hold larger items a few weeks ago, but never really got beyond touching, pushing and holding the odd larger toy. However this last week, with a little encouragement, she now manages to pick up much smaller items for herself, sometimes (when she's in the mood) she likes to be a bit cheeky and drop whatever she's grabbed so we pick it up, these are all great signs of progressing hand eye coordination and open up a whole new world for our Bud. We can now work towards the next steps of helping her feed herself – it's a while off yet but given the fact she's reached these two milestones (sitting up and grabbing small items) within a week I think we should prepare for it to be sooner rather than later.

Tuesday, 20 March 2012

Wow, where to start with this post? After the worries and concerns raised by last weeks TV viewing, I can safely say my faith in humanity has been fully restored!

A parent, inspired by Rosie, had initially approached staff at Harry & Joe's school to enquire about the possibility of fundraising for the Down's Syndrome Association. Two teachers then chatted with both Harry and Joe about this and they both jumped at the chance to get fully involved.

To kick things off, Harry, with the help of two classmates (and accompanied on stage by Joe) stood in front of their whole school – 250 children no less, and gave a talk about Down's syndrome. All this was kept as a surprise from Karen and I, so my knowledge of actual events is as told by Harry! They had apparently spent most of their break times indoors researching the topic and building a PowerPoint slideshow.

As Joe is that bit younger it was Harry and his classmate that did the actual talking, not only were we filled with immense pride at the thought of him wanting to do this but the fact he carried it out at all. In his early years of school we were often told he may lack a bit of confidence. I think this shows a tremendous credit to him and also to the school in which he has clearly flourished and feels comfortable and happy.

After the talk came the organising of a cake sale, one of Harry's friends had written a letter which went home with all the children (except ours!) explaining the reasons for the sale. He tells me his whole class wanted to be involved in the organisation and all forfeited their own playtime to help sell as many cakes as possible. The effort shown by all the staff, parents and children has been truly remarkable and the sale raised a huge £200 (£175 more than I had guessed when Harry asked me). To say I was blown away would be an understatement. Another tear jerking moment in the Bachofner house!

I can honestly say this is (so far) the pinnacle in a long list of moments that have made me so proud of both my sons, without their knowing they have shown a true love and displayed a genuine act of pride in their baby sister.

Aside from the fundraising, an even more important, somewhat priceless thing came out of this and that is the awareness that has been raised amongst the children and parents about Down's syndrome – another step towards making the future bright for Rosie and many others.

Thank you so so much to everyone involved with Wilmslow Grange Primary School we really cannot thank you enough.

Friday, 16 March 2012

I have just spent ages thinking about what I'd like to say about today (15th March), the moment has come and I literally don't know where to start. The year has had many highs yet equally many low points. Today has most certainly been a huge high for us all and I think the photo's show, none more so than for Rosie.

One thing I do have to say is whilst Rosie isn't as advanced in development as other babies her age, she has, in her one year of life, already shown more bravery and courage than I have ever shown in my 36 years and for that I will always be in total awe.

Wednesday, 14 March 2012

The future won't always be Rosie for our little bud, as with any child, she is no different there that much I know.

After all the recent positivity I've written about I had my eyes opened to a painful truth last night. I watched a programme on the BBC called, 'Letting Go' – part of a series focussing on living with disabilities. The previous week had been so inspirational about Nicolas Hamilton, (the younger brother of F1 driver Lewis Hamilton) and his journey to living out his dream of becoming a racing driver in his own right whilst living with cerebral palsy.

I had similar hopes for a positive programme this week knowing that it was mainly about young adults with Down's syndrome and their strive for an independent life away from the comforts of their own home. It is a box I didn't want to open and look inside just yet as it is something that deep down frightens me and lets face it, it's years away, however I thought it was worth the watch especially as I thought it may help me see how many of my worries could well be totally irrational. Unfortunately it had quite the opposite affect on me and I struggled through the whole programme as it slowly raised my fears more. I won't go into the ins and outs of why as I know every scenario is different but the one positive thing it did cement for me was just how I feel about Rosie. I thought to myself if somehow someone could come along with a magic wand and take away Rosie's DS how would I feel about that?... I can say honestly with hand on heart that I wouldn't change a single thing about her, Down's syndrome doesn't define Rosie it's merely a part of her 'make up'.

I know alot of what I write may change in the future, after all Rosie is (as of tomorrow) only a year old, we have so much to learn and so many more hurdles to jump with her but I can only talk of my feelings now. The one thing I long for is for that vulnerability to be erased and for perceptions to change so her future and everyone else living with a disability can truly be a better, more positive place. It was pointed out to me by a friend just how much love and support Rosie has around her not only from us but her wider family and friends, she is already a known part of the community here and for that reason alone she stands a great chance of having the future we all want for her.

Sunday, 11 March 2012

Rosie had a visit from her friend Ella last week, they went out for lunch and a natter before returning home for some play time. The photo's show Rosie and Ella deep in conversation, I'm not sure what they were talking about but Ella offers a consoling pat on the head, it all looked very serious indeed! Ella is three and a half months older than Rosie and has had a very similar start to her life having been through heart surgery too. I love to follow her progress and (whilst she doesn't know it) she's been an inspiration to me in her own right. Seeing how quickly she recovered after surgery, how she's growing and developing gives me great confidence for Rosie's development too.

We also had some good news on a medical front this week. It's very common in people with Down's syndrome to have an under active thyroid gland (the gland in the neck that secretes hormones regulating growth and development through the rate of metabolism). Each year Rosie will be checked for this and we were told on Thursday that her thyroid (at present) is perfectly normal.

Next week see's the start of our month of chaos as Harry, Joe and Rosie all celebrate birthdays (we clearly didn't think that one through very well!). I just can't believe Rosie will be one on Thursday where has that time gone?

Tuesday, 6 March 2012

Another week has passed by with yet more developments for our little 'bud.' She has really come on leaps and bounds over the last month and this week especially, has seen her interacting with, and enjoying toys a lot more – a direct reward for her determination to learn the skill of grabbing and holding.

The results of her determination have revealed a little bit more to us about the cheeky, funny and potentially mischevious character inside her...whilst her brothers (especially Joe) were busy demolishing a tin of chocolate biscuits, Rosie was, well... demolishing the tin! Playing with the internal tray divider which made a great crinkling sound then banging away on the tin itself like a little drummer.

Below are some pictures of Rosie playing and being cheeky with her new favourite toys as well as a short video clip of her destructive drum action!